Discussing Cancer with Children

We have four wonderful children in our family, three of whom happen to be incredible adult men. We have spoken honestly and candidly with the boys (ok, we still call them “the boys”) since the time of diagnosis.

Now that we have gathered our information, including diagnosis and surgical plan, it is time to tell our daughter, who is 4 3/4 that Mommy has FBC (though we will leave out the F- bomb in our discussion).

As much as I wish this experience were only happening to me and that I could shield my husband and children from the pain, the reality is that cancer happens within the ecosystem of family, friends and community.

Children are incredibly intuitive and smart. We adults do not give them enough credit. From the time of a diagnosis, children are keenly aware that something major has happened and try immediately (either on their own, or hopefully, with adult assistance) to make sense of the situation and develop coping mechanisms. In my professional experience as a Pediatric Hospice Nurse and Social Worker, I have seen firsthand that children know something serious is going on even when no one says anything to them.

At EVERY age, children deserve to know what is happening. Silence is NOT golden. They deserve open lines of truthful communication. Truthfulness is the best (and only!) way to establish and maintain a bond of trust, with everyone, but especially with children. Discussing illness honestly and openly will teach children that parents are trustworthy and that honesty is a core family value.

Many loving, intelligent and responsible parents find themselves trying to hide the truth from children because they think: “children can’t understand what is happening”. That is pure and utter malarkey. Children as young a year know when things are haywire in a household, whether it is divorce or FBC. They K N O W.

Another common excuse adults use to avoid telling children is “they shouldn’t be exposed to something so awful”. Well, that’s 100% true. Exposing children to FBC is brutal. Heart wrenching. For me, it is the worst part of this whole FBC. HOWEVER, life has its way of throwing us some hefty challenges. In this situation, denial only makes things worse.

With these assumptions-about lack of knowledge and capacity for pain-parents unintentionally (or intentionally!) throw a blanket over the elephant in the room and spend enormous amounts of energy either avoiding or distracting the children from that elephant. I happen to adore elephants and when they are in the room, I prefer to welcome them and offer them some tea (or a martini!).

For those people who have a challenging time talking with children about difficult things, like FBC, the highly motivating factor to address that elephant head-on is that no matter how hard adults try to hide information, whatever is being discussed in the house (even behind closed doors) WILL be heard either all or in part by the children. When children overhear information, the likelihood of misunderstanding is high.

Avoiding communication with children also sends the message that either they are too unimportant to share the information or that it is so awful that it cannot be discussed. Either way, a child is left alone with the distressing information. How awful is that?!? Further, this aloneness forces them to draw inaccurate conclusions or find maladaptive ways of dealing with FBC. While it may seem hard to believe, we all need to know that a child’s imagination has the capacity to create things far worse than the reality. Really.

Furthermore, if children catch you in a lie of omission or deception (even though lovingly intended), then from that point forward, they will always wonder, “Are Mommy and Daddy not telling me something?” Avoidance feels better to parents in the short term, but has the potential to do long-term damage.

Therefore, including children (of all ages!) in the disease process and treatments, though emotionally burdensome and painful, will ultimately be the greatest gift parents can give them. Inclusion enables children to have an accurate, healthy and hopeful understanding of the situation and learn adaptive coping mechanisms. Words, actions and love will determine the positive impact of illness. Yes, I said positive. Remember: there are Silver Linings (SL) everywhere!

So, we are obviously going to discuss this situation with our 4 ¾ daughter. Now, I’ll tell you HOW we are going to tell her that Mommy has FBC.

When discussing a diagnosis and treatment with children, always start from where they are in their developmental process. In other words, you talk with a child who is 4 3/4 differently than you would a 10 year-old. Children absorb different levels of information and complexity at different ages. Parents are always the best judges of what their children can cognitively understand.

Keep in mind that being honest does not necessarily mean telling everything, especially when a child isn’t ready to understand. It does, however, mean always, always, always tell the truth!

Our 4 ¾ daughter happens to be an inquisitive, precocious and sensitive preschooler (who adores her Ariel high-heels). Typical features of this preschool stage of child development include:

Egocentricity. In other words, “It’s all about ME.” All events happen in relationship to them. (Don’t you miss the good old days?)

Associative Logic. This means that any two unrelated things can be connected as if one causes or explains the other.

Magical Thinking. Young children believe in their own omnipotence which means that what happens around them happens because of them.

Play is a vehicle for exploring reality. Play is the work of children. This is how they acquire information and grow: socially, intellectually and emotionally.

So, where do we begin? We are going to tell our daughter the same three things that I had told patients in my own clinical practice (courtesy of Kathleen McCue, MA, CCLS):

Mommy is sick.

Mommy’s sickness is called breast cancer. (We use accurate names for anatomy in our family.) Euphemisms are confusing and lead to mixed messages and anxiety. It is imperative to use the exact name of the disease.

Mommy is going to be treated by nurses and doctors in a hospital for 4 sleeps. Then, I will be home. Daddy and I truly believe that I will get better.

Telling your child that you have FBC (or anything of that magnitude) is definitely an emotional experience. As if having FBC isn’t hard enough. Phew. While it is important for children to have other adults with whom to share fears and worries, we cannot shield children from our feelings completely.

If parents get upset while talking with children, that’s ok. Simply acknowledge to the children that parents sometimes feel scared, sad, angry, or worried, but that it won’t last forever. Let the children know that it is okay for them to sometimes feel those things too. In fact, sharing a few tears together can reassure children that feelings do not need to be completely overwhelming, and that parents will be there to support them and to try to understand how they feel. This sounds so much more difficult than it actually is. Pinky-finger promise.

At some point or another, there will be three questions that our daughter will ask (either internally or externally):

Did I cause the cancer? This question arises directly from Magical Thinking. A preschooler could easily surmise that she caused the cancer. So sad, I know. But true. This is the reason that adults have to address this issue head-on and assuage any misconceptions.

Is it contagious? Our daughter has just learned the word contagious and uses it every chance she gets. She understands that colds are contagious, for example. She could quickly and easily use associative logic to connect cancer and cold. After all, they both begin with the letter “C”. We need to dispel this notion immediately.

Who will take care of me while Mommy is sick? Thanks to their egocentricity, preschoolers are afraid of being left alone. They need to be assured that someone (whom they know) will be there to take care of them while the treatment period takes place. Along these lines, consistency is of utmost importance because it equates to security.

We will bring up these questions whether she articulates them verbally or not because inevitably they will enter her mind. Fundamentally, we will provide enough information to dispel our daughter’s immediate fears. We will reassure her that we will keep her informed and prepare her for what’s coming next.

Along the trajectory of this illness, we will encourage our daughter to process facts & feelings. We will encourage her to share with us what she hears about my illness, or about cancer in general, from other adults and children. This encouragement sends the loving message, “Do not worry alone.” Worries based on misconceptions can be easily dispelled. Just knowing that they are shared can lessen other worries. Additionally, it is incredibly important to encourage children to ask questions, anytime.

Inevitably, the subject of death will come up. People do die from FBC. I happen to believe that I’m not going to be one of those people. The preschool age is the period in which children develop a developmentally appropriate fascination-bordering on obsession-with death. When this topic arises, as difficult as it may be, parents need to be completely open to answer questions honestly, without evasion or embarrassment.

What else are we going to do? Maintain a consistent schedule with normal discipline (e.g., the use of good manners) and limit setting just as before the diagnosis. Often, adults make errors of kindness. For example, they may allow children to stay up late to watch a movie or eat whatever they want because Mommy is sick.

Most people know my feelings about sleep and diet: they are absolutely, positively the most important fundamentals of childhood. Without a good night of sleep, everything else goes haywire. As if things aren’t already haywire enough. No matter what: keep bedtime and eating routines normal-normal-normal.

We are also going to teach her about Silver Linings: finding the good in something bad. Now THAT’S a SL in a SL!

While we cannot protect all of the world’s children from the big and little “lumps” of life, our approach to handling this FBC will lay the foundation for how our daughter handles the inevitable future “lumps” in the road.

Children are wonderfully resilient. We have two choices in how we are going to handle this FBC: from a position of fear or love. We are choosing love. Our daughter will mirror our words, actions and emotions.

Comments

Hollye,
I recently came upon your blog and am enjoying all the input, insights and confirmation. My husband and I were both diagnosed with The Big C in 2010, just 7 weeks apart. Some of the greatest challenges we have faced in this journey revolve around our children who were 5 and 3 years old at the time of diagnosis; even though we discussed our illnesses openly with them, and kept the discussions age appropriate for each (big difference between 3 and 5 years), this double whammy has been a huge trauma. Their lives, however, will be forever enriched by the skills they have learned in adapting to this situation.
It was extremely difficult for our 3 yo son to have his life routine unsettled. As much as we prioritized keeping bedtime, meals and preschool the same, now grandma was taking care of him, Daddy and Mommy couldn't pick him up or rough house with him, his play room wasn't reordered several times a day as it always had been…Mommy and Daddy were very sick and Daddy kept leaving for out of town treatments. Our son acted out at home and preschool, expressing frustration and anxiety. As he has matured we have worked with him on verbal expression of emotions and especially finding ways to verbalize insecurity (a difficult accomplishment for everyone).
Our 5yo daughter was more verbal, asking questions and letting us know what was on her mind. She felt abandoned by us and resented grandma for coming in and taking over. It was important for her to realize she has a large support team which surrounds her and always will throughout life. The best technique I learned for having pertinent discussions with her was to probe back with "what do you mean by that?" rather than jumping in with a response based upon my assumptions of where she was coming from. Case in point: "Mommy, what if you don't win the fight with cancer? What will happen then?" "What do you mean, Honey?" "I mean, who would take me to school and put me in time out?" OK, save the discussion of heaven for another day! This was a relatively simple reminder about her support team, focusing on god parents.
Best wishes to you in your fight. Thank you for sharing your journey in such an uplifting fashion!
-Lynn D

My name is Kristina and I have been a marriage and family therapist for 14 + years with a specialty in medical family therapy. I am also a wife and mother. I have just come across your blog when a friend on facebook nominated you for a writing award. I am reading your journey "from the beginning" and was compelled to respond and write you after reading this entry. I cannot say how much I agree with you and how often in therapy with couples and families struggling with illness that I try to impress upon my clients how important it is to be honest and age-appropriate in sharing with your children what is going on medically. So many think that keeping it a secret is protecting them when, I believe, in fact that it does just the opposite. It incites fear and anxiety and mistrust. Though I do not have FBC, I have endometriosis and am planning on my fourth surgery – a hysterectomy – this fall. The moment my husband and I with my GYN decided on this next course of treatment we told our children – 15yo daughter and 13yo son. Not only do I believe they have a right to know about all things that impact our family system, but you are SO RIGHT about how they will hear things and how will they believe us when we do talk to them if we try to "protect" them by hiding things from them?

Thank you for writing this post, I will share it with clients and with the students that I train as an Associate Professor and the Director of a Marriage and Family Therapy program. Thank you.

Hi Kristina,
Thank you so much for your comment on the blog. I can't tell you how much I appreciate it. Truly. It means the world to me. I've written extensively throughout the blog on working/talking with children. Please feel free to use anything that would be helpful…and if there is anything else that I can do for you, please do let me know!
Wishing you great health as you contend with endometriosis.
All my best wishes,
Hollye

Hollye,
I have now read this part of your blog 10 times. I find it to be the most illuminating writing I have ever encountered relative to children and illness. Obviously you have counseled many parents on this subject, but more importantly you found your own way, for your own child, and your own needs, to be all that any parents ever aspire to be. You are truly one of the most beautiful human beings ever put on this earth.
As much as I loved the gentle way that you explained things not only to your child but to those who care about you as well, I adore the fact, that your adoring husband communicates with equal honesty, his adoration, and frustration with all that is not perfect for the one he cares about most. Great team!!!
Get well soon. We all love you. Katherine

I wish I had this information earlier in my life. I've made so many mistake trying to "protect" my children from pain. To tell them the truth IS so necessary. I'm still blown away from reading this. The wisdom, the love, the ability to get through life together: as mother and daughter and as a family. Truly extraordinary!

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Hollye’s book, The Silver Lining: A Supportive and Insightful Guide to Breast Cancer, was published by Simon & Schuster on March 2014. The book is co-authored by her dear friend, photographer Elizabeth Messina. It became a New York Times, Washington Post and LA Times bestseller.